Archive for February, 2009

Neil: Ruth likes hoovering

Thursday, February 26th, 2009

Jasmine on the swings

I woke today to the dulcet tones of Ruth bawling out the window. She had been keeping up surveillance on the fencing club below us and had caught someone throwing litter in the flower bed (this is being generous to the patch of dirt by the wall outside our window). The guy sheepishly picked up his litter and put it in the bin.

That was just the start of a hectic day. We did the stock take for Baxter ready for our next delivery. There has been a mix-up over the different types of alco-wipes that we get, so Ruth had to explain the problem. The woman on the phone said that there had been a shortage of alco-wipes which is probably explained by the fact they keep delivering them to our house and not giving us any of the other ones which we need.

Jasmine’s catheter dressing needed changing as well. It was a bit crusty today, as she has been pulling on it and it has been weeping. It is difficult to stop her pulling on it, as she is getting very fast.

Jasmine was also due to have her Epo injection. Ruth gave the injection this week, and did a great job, I held Jasmine on my knee while she got stabbed in the leg. She screamed, but soon got over it.

We need more Epo syringes from the chemist, so we tried out the new ordering process. I phoned up the pharmacist and told her what we need. She is going to fill out the prescription, take it to the doctors, get it back from the doctors, order the medicines, and give us a ring when everything is ready. As you can imagine, this should be fantastic, and save us many trips to haggle with the doctors over lost prescriptions.

Our hoover has been on the way out for a while so we went to Argos and got a new Henry Extra. Ruth was so excited we had to unpack it immediately and spend the evening hoovering the flat. Ruth told me, and anyone else who would listen (she kept phoning her parents and giving them updates), all about how she likes hoovering.


Usually we wouldn’t have had time to walk out on such a busy day, but we are managing to do everything a bit faster these days. Though I was worn out just from watching Ruth shampoo the carpet and do her yoga, and had to take to my bed…

Neil: Transplant talk

Thursday, February 19th, 2009

We have all been to the hospital to talk about transplants. As we waited in the windowless reception area with all the ill people we soon felt pretty depressed.  We met the living donor transplant co-ordinator and had lots of questions for her.

I had the initial screening tests. You have to have good blood pressure and a body mass index no greater than 30. I was fine on these, and on the urine test.

I can now go on to the transplant assessment day, which does take all day. I will get blood tests for various viruses, creatinine clearance tests, a glomerular filtration rate (GFR) test using a radioactive tracer, an electrocardiogram (ECG), chest X-ray, renal ultrasound and computed tomography (CT) scan. This will ensure that I am healthy enough to donate a kidney, check that I actually have two kidneys, and confirm how many arteries my kidneys have, to decide which kidney would be removed. A significant proportion of potential living kidney donors are rejected after these tests. If you are rejected then whatever health problem you have has to be monitored by your GP.

The good news is that Jasmine is a universal recipient, and so can accept kidneys from any blood group, and would have a reduced waiting time for a cadaver kidney. It also means that Ruth could be a potential donor in the future when Jasmine’s first graft (kidney transplant) fails. All the statistics are at uktransplant.

All kidney harvesting is done with the hand-assisted laparoscopic nephrectomy technique. This gives reduced recovery times and smaller scars, and is supposed to allow the kidney to be harvested just as well as the open technique. I would be in hospital for a week, and have to take it very easy for some time afterwards. I would be on morphine for 24 hours, then the strong paracetamol for a week, and weaker paracetamol after. I will have to keep the wound clean, and go for a check up after four weeks, to keep an eye out for hernias. I would have a check-up every year for the rest of my life.

Potentially, my kidney would then be taken across London to Jasmine in Great Ormond Street Hospital and she would be in hospital for a week or more. We would then have to take her in every day for six weeks for blood tests. We would also have to monitor her fluid balance, replacing any fluids she loses to ensure that the kidney is fully hydrated. We keep being told that this will be very stressful, and I’m sure it will be, but we already do a lot every day, and we wouldn’t have to do any dialysis, and Jasmine’s vomiting should improve straight after the transplant. We want to get Jasmine a kidney as soon as she is big enough to accept one so she can get growing and have more energy.

After many hours in the hospital we were totally stressed out. We went down to a pub on the Thames for some lunch and I had a pint to steady my nerves…


Wednesday, February 18th, 2009

Jasmine sharing her toys

Jasmine likes to share things with us. She will lick whatever she is playing with then give it to you to put in your mouth. Sometimes she pushes it straight into your mouth. And sometimes if you are having a snooze she will bash you with whatever she is playing, so that you can wake up and share it. Ahh!

Her other new skill is that she can clap and she does so all the time and she is brilliant. She started doing it the other day. Her Great Auntie Carol bought her a nursery rhyme book which sings so Jasmine likes to clap along to the singing and then gets very upset if you take the book off her to feed her. So it comes everywhere with us. She likes you to sing along with the book whilst she claps but she turns the pages so quickly that sometimes you are singing Twinkle Twinkle Old Mac-Rockabye Hickory Dickory Dock. Singing all the nursery rhymes together is a talent I didn’t know I had but Jasmine is very impressed.

This week has been quite hectic again. We went to clinics on Monday and Jasmine is growing but slower than before, but apparently that is quite common and nothing to worry about as she is getting all the right levels of protein and the rest of it. She is getting her vitamin D levels monitored too now, which is very good as she is taking part in some new research. They have learnt down at GOSH that vitamin D levels which are too high or too low can affect the artery blood vessels and make them brittle, which can eventually lead to heart problems. Her blood pressure was running a bit higher than is completely comfortable so the consultant reduced her fluids and the dietician gave us a new recipe to make her milk a bit more concentrated.

After GOSH, we went to see an acupressurist to see if she could help us reduce Jasmine’s vomiting. The idea behind the bit of acupressure we are now performing on Jasmine is that we massage her digestive system so that it works quicker and her milk moves quicker through her so she has less time to vomit. This is how the drug domperidone works – it stimulates the digestion to push food through the gut – but unfortunately it had unpleasant side-effects on Jasmine so we had to stop giving her it. So, we are giving acupressure a go. It has been two days so far and there has been a bit less vomiting (saying that though I have just heard Jasmine vomit in the other room where Neil is keeping an eye on her). We have to be patient and try for a good while, as when we began the acupressure on Monday her dialysis program and her diet got changed at the same time, so we need to wait a few days for everything to settle down and then we will see properly what is going on with the acupressure and if any changes need to be made.

Everytime she vomits though I get really disappointed, which is silly, since she can vomit up to 20 times a day and that is not going to disappear overnight. Neil said acupressure is not sorcery and we have to work at it. He is very wise!

The other amazing thing is Jasmine has managed to drink all of her milk for the last 10 weeks without her NG tube. This is just incredible. Although, the other day she did struggle as another tooth was coming through and Neil got a bit down thinking that we might have to put the tube down. But, I was (unusually for me) feeling positive and said that if it did come to that then at least her nose has had a rest for 10 weeks and we would get a bit of a break on an evening – as we always wake her up to give her a nighttime feed, otherwise we struggle to meet her full quota, which she doesn’t like at all and kicks up a big fuss.

Over the weekend Neil and I met some doulas so that if I go into labour during the night when Jasmine is on dialysis, I have someone to take me to hospital and stay with me through the birth, knowing that Neil is with Jasmine and we don’t have to worry about her and our doula is with me so Neil doesn’t have to worry about me. We have found a lovely lady so I am feeling all excited now. It was a bit tough talking to doulas at first as their first question is understandably: “Why do you need a doula?” So that was hard, as it meant talking about Jasmine’s birth and all that we went through.

Feeling settled in my mind has meant that I have finally gotten off the settee and onto the floor to do my yoga. And I am feeling better already. I found that I couldn’t do the pregnancy yoga that I did before as it brought back all of last year, but now I am raring to go and get birth fit. Hurrah! Neil is very encouraging and Jasmine sits on the settee throwing toys off it and sometimes onto me – helping in her own way.

Today we are off to the GP for Jasmine’s latest round of innoculations. She has two today and then she needs two more in the future and then she is ready, vaccination-wise, for transplant. After that she won’t be able to get any more innoculations as she will be immuno-suppressed, so we have to get them all in now.

On Thursday we are off to another hospital with Neil to begin talking about transplants and living donors and to investigate Neil’s potential as Jasmine’s living donor, which is really scary but could be really good as living donor organs have much better results.

I keep hearing lots of people at the moment moaning about their lack of achievements in life (job, career, money, whatever). And I am a bit fed of up to be honest (pregnancy hormones are responsible for a lot). So today, my advice to anyone who feels like they haven’t done much useful with their life is: give a kidney away. One way to do it is called non-directed altruistic donation where you don’t know the person who receives your kidney, but you save a life. What greater achievement is there?

I know a lovely lady who gave her son her spare kidney and this is what she has to say on the subject: She is an inspiration to us all.

Happy Birthday, baby

Wednesday, February 11th, 2009

Jasmine opening her cards

Jasmine is one today. I have cried a lot, tears of joy. Neil has been his usual lovely self, and has rubbed my back a lot. And Jasmine has been non-plussed by the whole event, even though she received loads of lovely cards and presents (thank you, everyone).

We only managed to get her to look at the first card, as shown in the picture here, that played music, and then she was permanently distracted by the envelopes and the lovely shiny wrapping paper. So in a few days time perhaps she will notice that she has lots more interesting things with which to play.

Jasmine blowing out her candle

Jasmine loved the candle on her cake and kept trying to touch it, but didn’t want to taste the cake itself, so Neil and I had a little slice each (now there is only a little bit left).

Jasmine being her gorgeous self

There was a bit of a mix-up with our dialysis delivery on Saturday when it finally arrived, so Neil had to rush off to GOSH this afternoon to pick up more supplies, and when he came home he arrived with a gift from our lovely nurses for Jasmine’s birthday. Here she is modelling one of the hair ribbons, sitting next to her new teddies (she also got a cute hat and mitts but we will save those for another picture).

Jasmine at birth

And finally, we keep this picture in a frame in our living room. It was taken after Jasmine arrived at Great Ormond St, once the team at Homerton had spent several hours making her stable enough to travel. Some lovely person in NICU took two pictures for which I was so grateful. I got to study my daughter whilst I was still at the Homerton and poor Neil was dashing back and forth between hospitals, after having had no sleep the night before.

So today, we remember and thank all the doctors, surgeons and nurses at Homerton on the first day and GOSH ever since, who took such great care (and continue to do so) of Jasmine and I. We remain eternally grateful and give thanks that such wonderful people exist. And we thank everyone who has thought of us, prayed for us, and shared with us over the past year. Thank you for all your love and support.

Lazy Sunday

Sunday, February 8th, 2009

A lazy Sunday for Jasmine

After all the drama of the week, we have had a lovely Sunday – just lounging about and taking it easy. We are hoping for an early night tonight surrounded by our dialysis boxes and to catch up on our sleep. We will be doing the dressing and the usual dialysis stuff later.

I love Sundays it is the only day of the week when you don’t get post, phone calls, and deliveries. It gives us time to collect our thoughts ready for a new week. Magic!

Your time is cheap

Saturday, February 7th, 2009

Jasmine's latest prescription delivery

As a parent of a chronically sick child, the message I get everyday is that my time is cheap and I have nothing better to do than either wait around for people who are supposed to make my life easier or I have all day to chase them up when they don’t do their job.

This has happened several times with the community nurses who expected us to sit in ALL DAY and wait for them. It always happens with Fresenius the rubbish food pump people who can’t even deliver giving sets, all the time with our local Primary Care Trust (PCT), and this week it even happened with the Baxter Dialysis people who couldn’t manage in the snow.

Baxter send me a text the day before our delivery is supposed to come to give us a time slot. On Thursday I didn’t get one. I rang them up first thing Friday morning and was told that our delivery would arrive in the afternoon. After much wrangling I managed to get the information that our slot was 11am-2pm, but it would be later especially since we were 6th in the delivery round. Ok fine. We got another phone call at 12noon to say that it wouldn’t be coming, it might come on Saturday if we were lucky – no times at all and that I was unreasonable to expect one, especially as we weren’t an emergency case (I don’t know who is if we aren’t). When I tried to explain that it was very stressful not to know, the woman who was sitting in her call centre told me that she understood EXACTLY how I felt. So, this silly woman with her silly sing song-voice who interrupts you everytime you try to say something knows exactly how I, a pregnant hormonal mother of a chronically sick child, feels. Well she is obviously wasted in the call centre and she should be putting her empathetic talents to better use.

Later we got another phone call to say that the delivery would come on Monday but we would get a phone call from the call centre over the weekend. Ok! So I got out of bed this morning and rang them up to get an ansaphone message telling us that they are closed until Monday so tough luck.

So I was trying not to stress about it, especially as we are due at the hospital 9am Monday morning for a day of hospitals – scans for me and then GOSH – so who knows where this delivery would end up. At noon I was chatting to my mum on the phone (poor woman has to listen to all my woes). When I put the phone down I had a voicemail, and it was the Baxter delivery man, who had been outside 10 minutes earlier (our doorbell intercom is stupidly connected to the phone). When we got downstairs the concierge had already sent him away along with our month’s supply of dialysis bags/dressings/swabs/everything because when the concierge rang our phone/doorbell intercom to ascertain our whereabouts he got an engaged tone, demonstrating that we were in the flat.

After some frantic phoning round (us, not the concierge and not to Baxter who are SHUT even though they know their deliveries are all over the place because of the snow) the Baxter man rang us back and finally came back with the delivery. So, all’s well that end’s well.

Really though, my irritation with how people treat us started at the beginning of the week (if we don’t mention the relatives) when the PCT sent Jasmine a letter to invite her to an open day about food pumps and NG tubes because they don’t know whether to renew Fresenius’s contract with the NHS – even though they sent us a badly designed questionnaire before Christmas on the same subject. Now, I don’t know that many people who wear NG tubes but that is probably because if they need to wear an NG tube then they are too ill to feed themselves and if they are too ill to feed themselves they will be too ill to go out and meet people and go to stupid open days organised by the morons who run the PCT. But then that is just my opinion. And as Jasmine’s carer obviously I have ALL DAY when I am not waiting in for community nurses and deliveries by the concierge’s desk in case he sends everyone away, to go to their stupid open days to tell the PCT how to do their jobs. I would only get to one of their open days however, if I turned private detective and tracked down the incomplete addresses of the random health centres (which seem to be miles from where we live) they included in their inaccurately addressed, grammatically incorrect letter to Jasmine, who can’t, by the way, yet READ.

The next day, Neil went to the GP to pick up our prescription which we had put in 48 hours earlier. They had lost it for the second time this month. (We keep needing to go to the doctors because the dieticians are so hopeless they can’t calculate that a 200gs tub of maxijul only lasts us two days so we need more than four a month – I am beginning to suspect you don’t need much in the way of social skills nor ability to be a dietician. They have software to tell them what to do but unfortunately they won’t give us a copy of it, and it doesn’t include instruction on social pleasantries.) Could we come back the following day? I rang them 9am the following morning to be told that I needed to ring back Friday. I said no and that I was on my way there. When I got there they had created a new prescription which missed off two of things that we absolutely needed and they had already dropped it to the chemist who then needed to order the stuff in. Stuff arriving at the chemist is variable depending on the delivery people. So we plan two weeks in advance and even then sometimes we have to run down to Great Ormond St to get emergency supplies. So when the receptionist at the doctors suggested I should plan in advance, say a week, before I put my perscription in, I again was amazed at how many talented but totally wasted people there are out there who should be running the country instead of squandering their gifts as they do.

Anyway, our lovely chemist got on the case with our GP and the helpful planning lady and they have doubled all our doses and got us some BIG tubs of maxijul (as you can see from the pic) and now we shouldn’t have to go back for a month or so. Hallelujah! So if our lovely chemist could just come and live with us and sort out the rest of the healthcare suppliers and services and the dieticians whom we need to interact with and train our concierge not to send our deliveries away, then we would be off our heads with joy! She is great and we love her, especially next week when she will phone us to tell us that the calcium acetate has arrived (and the rest of the vitapro).

It’s snowing!

Monday, February 2nd, 2009

Stalker-Firths in the snow

We ventured out this morning to go the chemist to get some more vitapro for Jasmine. It was amazing. The snow has covered everywhere and there were lots of people out building snowmen, having snowball fights and jumping up and down in the snowdrifts.

Ruth, Jasmine  and Neil in the snow

After the chemist we took Jasmine to the park, although it was a bit tricky pushing the buggy through six inches of snow. Jasmine took the whole thing in her stride, of course, and wasn’t half as excited as us and even fell asleep in the buggy on the way home.

Neil and Jasmine in the snow

Now we are in the warmth and Jasmine is still asleep. I am not surprised. Yesterday was a long and tiring day as she was teething and unusually irritable and didn’t sleep at all during the day. She vomited a lot and at bedtime we gave her some calpol to give her toothache relief so that she could finally go to sleep.